Sunday, July 18, 2010

Awareness

Apparently this week is Sarcoma Awareness week. I remember when I was in the events world I used to get regular updates on these sort of weeks and the events associated with them. There are millions of the things; did you know that there was a chocolate week for example? I decided that as I couldn't remember which week it was I would have to celebrate it every week, every day in fact.

Same with Sarcoma really although I do not celebrate it, and how aware of it am I? Mostly it's the chemo and its effects I am aware of, no hair (although it's starting to grow back and I don't think it is all grey), runny nose, ghostly nausea and seascape nails. Then there are the scars from the surgery which strangely have kicked off again soreness wise; but the sarcoma itself well it's just the lump at the back of my leg really and that just gets lost with all the other lumps lurking on that particular limb.

There is something I am supposed to do to my Facebook page to alert people to Sarcoma Awareness week but I couldn't work out what it was from the instructions and so apart from this blog my contribution will be nil. So folks please be aware and make your friends and family aware that Sarcoma sucks, it's rare so there's no money in it and that to my certain knowledge there is a group of people suffering from it who must be the bravest and best in the world. These are the Mimis, Amys, Shirleys, Kathryns, Karens, Christophers, Dots, Peters, Rogers and loads of others who through their pain and fear research, and fight and share and cheerfully survive despite having bits lopped off themselves and poison pumped into their veins. In America there was a Dr Dee who finally didn't survive but whose memory lingers on and who it would seem did more for Sarcoma awareness and research than any of the professionals who are paid to help us out.

Sarcoma needs more money, more interest, more notice because there are things out there that can help us, there is a right way and a wrong way to tackle the bastard, it's not good enough to say we are too rare and expensive or leave us to the lottery of insurance or the passing interest of a few devotees.

Be aware, it's Sarcoma Awareness Week and for some of us, and our families and friends, Sarcoma Awareness life.

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About Me

I am 62, retired from running my own events business. I have been married to Stewart for 43 years and have four fantastic children, Sam, Joe, Luke and Jess, four grandchildren, Harry and Danny and new twins, Max and Charlie; I also have two step-grandchildren, Hannah and Chelsea.
On 11 September 2009 I was told that the very rare leiomyosarcoma that was found in one of my veins in summer 2008, and removed, had metastasised and I now have sarcomas in my lungs. By April 2010 it had got to my liver and back to my leg. In January sarcoma nodules were found on the horse's tail, the bunch of nerves that come out of the base of my spine. Despite radiotherapy, the paralysis spread very quickly and I have no feeling at all from my hips down.
I will try to log what all this feels like in this blog and keep in touch with friends, family and fellow travellers along the way.